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Post IVIG Symptoms
Hey all!
I know my post is much later than usual and I apologize for that! I had my IVIG infusions yesterday and today and needed some more time to rest.
Normally, it takes me a few days to recover after IVIG but today has hit me rougher than usual.
What side effects do you guys usually experience after IVIG? How long do your symptoms last?
Do you find that your side effect change monthly?
For me, my biggest issue is a migraine post treatment, sometimes it last for a couple of days. Sometimes, it doesn’t bother me much at all while other times it’s more noticeable. I have always had migraines but the pre-meds I’m on usually keep them tolerable.
Hope to hear from you guys!
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4 Replies
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I’m so sorry to hear you are struggling with post ivig symptoms. Grace sometimes experiences a headache, sometimes nothing at all. I hope you feel better very soon.
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Lori, I’ve often heard headaches during infusion can be mitigated by slowing the delivery rate. As an example, my rate starts 30 and steps up sequentially for about 45 minutes. Mt final rate is 150. I experience no headaches during or post infusion. I hope you and Grace will begin to pay attention to the infusion rates if you aren’t already, and not be bashful to ask the nurse to reduce it some if headaches during the infusion are the issue. I’m also assuming she’s getting some pre infusion meds. For me, two Tylenol.
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HI Ashley,
I was having headaches until I got 500ml saline before AND 500ml after. Hydration is Very important for me. Also, like Price above, my rate was WAY to fast for the 1st couple of courses. It was slowed down to no higher that 90 for 4-5 months. Then they started inching it up to 120. It starts at 30 like Price, then 45, then 60 but final rate no more than 120 for me. I hope this might help. My IVIG nurses are absolutely wonderful & do every thing possible to make me comfortable. After about 4 months, the saline started to bother me. My nurse started warming it before infusion and that did the trick.
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Hey
@lorildunham
Thank you! Yes, its interesting how symptoms seem to change monthly with almost no rhyme or reason.
Hey
Thanks for the tips, They are all very good ones! I actually already get 500 of pre and post saline and I also get solumedrol as a preventative. I have a history of migraines before LEMS, so I think mine are worst than most. I also keep my rate a little bit slower than you and don’t change anything about my routine.
I had a pretty stressful week at work prior to my infusion and a stressful weekend so I think that definitely exacerbated things. Work has been pretty stressful because we have started getting the second “wave” of COVID patients
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